Home Forums Melanoma: Stage III watch and wait

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  • #22161
    cavsnut
    Participant

    Hi all…first post here. I know there’s a couple or more posts about this here, but some aren’t very recent. So, since I’ve googled about everything I can on this just thought I’d ask here too… I recently had my WLE/SLNB on calf, 4 lymph nodes in the groin removed…one came back positive with on tumor measuring .9mm, other 3 were clear, as well as clear margins in calf WLE…I know the doctor is going to recommend taking out the superficial nodes tomorrow when I go for my follow up appointment, but just don’t want to do that at this point with only one microscopic tumor showing up in one of the four nodes taken out…would rather watch and wait than go through with such a morbid surgery with all the side effects it entails…ok…question now that my babbling is over…just wondering how many have not gone through with the lymph node dissection and how big does the tumor in the lymph node have to be before the ultrasound can pick it up?

    thanks

    craig

    #65362
    Catherine Poole
    Keymaster

    Hi Craig, and welcome,

    It is still under investigation, whether total node dissection is the standard of care. I would get another opinion on whether a partial dissection would be more prudent. In other nations, they do watch and wait and use ultrasound to follow. I would go to a place where they are studying this option. What part of the country are you located?

    #65363
    cavsnut
    Participant

    Hi catherine, I live in Ohio, going to the James Cancer Center at Ohio State…My oncologist actually said the next standard of treatment would be a partial lymph node dissection of the superficial nodes, but I chose to go with the watch and wait with ultrasound monitoring…while she said she couldn’t legally agree with my decision as it’s not the standard treatment, she did say she was comfortable with it with such a microscopic amount found in one node…

    #65364
    Catherine Poole
    Keymaster

    That’s great to hear. I think the studies will bear out that complete node dissections are overkill, but the results just aren’t in yet. Hope all goes well for you and I admire your courage to choose your path.

    #65365
    cavsnut
    Participant

    today was my one year scans and groin ultrasound…everything was normal…yeah!!!!!!!! What a good day it turned out to be :D

    #65366
    Catherine Poole
    Keymaster

    That is great news! And the ASCO meeting in June showed an abstract that proved complete node dissection was overkill for micromets in one node. Partial dissection is certainly proving to be equally effective. Thanks for sharing your good news with us.

    #65367
    cavsnut
    Participant

    An update for the thread, had my ultrasound today, all clear, 18 months NED since my decision to watch and wait with ultrasound. I’ve been very fortunate with the outcome of this decision and hope this gives others some solace if they so chose to go this route as well… just very, very thankful and blessed today…

    Craig

    #65368
    Shirley Z
    Participant

    Great news Craig. I had no choice but to have a CLND 9 yrs ago. I had a matted palpable cluster in my groin that had spread from my big toe. I can tell you that I struggle on a daily basis with lymphedema. I feel you really should weigh out all your options with micro mets as the CLND can be life altering.

    Continued best wishes to you.

    Shirley Z

    #65369
    HeidiZ
    Participant

    I was 3a with a microscopic amount in 1 lymph node and was told by 3 doctors they couldn’t recommend having a lymph node dissection with such a small amount of disease. They suggested scans and ultrasounds. I wish I would have done the dissection because I ended up finding an enlarged lymph node in my neck myself 5 months later and now I’m Stage 3c. The ultrasound never picked up the lymph node the month before.

    Heidi

    #65370
    Catherine Poole
    Keymaster

    Sadly, the methods for detecting mets in nodes aren’t refined. Taking them all out though doesn’t guarantee the mets will not have entered the blood stream and overall survival isn’t guaranteed. So it isn’t a win win proposition either way. Hopefully our methods will improve with research along these lines.

    #65371
    cavsnut
    Participant

    Although watch and wait was at times an arduous decision for me,am I doing the right thing? am I doing the wrong thing? So far it seems the right one…today I had my 2 year CT scans, ultrasound, and blood work…by the grace of God I remain NED…thoughts and prayers for everyone battling this disease…

    Craig

    #65372
    Catherine Poole
    Keymaster

    Thanks Craig for starting my day with a smile. All sounds good! Take good care.

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